My question has been answered

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My question has been answered

Postby selkie » Tue Aug 17, 2010 12:47 pm

Hi all,

I'm very confused about Hubbard.

I've received multiple emails from them in which they say the only test they will be doing is an MRI of the brain.

Then you read in their FAQ at their website, that Dr. Hubbard will ONLY refer you to an IR for the procedure (venogram & catheter) if Hubbard's tests show you have a blockage of the jugulars and/or azygos per Haacke's protocol.

How can they tell that only from an MRI of the brain. Hubbard's email today say the ONLY do an MRI of the brain. How does this tell them anything? I'm feeling like something is wrong here or else there's been a huge miscommunication.

They don't answer phones, and frankly emails are just not an efficient way of communicating about something so important involving thousands of dollars and thousands of miles of travel.

very dissappointed right now.
Last edited by selkie on Fri Aug 20, 2010 3:24 pm, edited 1 time in total.
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Postby selkie » Tue Aug 17, 2010 12:54 pm

P.S. If anyones gone to Hubbard, could you please PM me? Maybe you can help me clear up what I'm not understanding about their FAQ and the info I'm receiving. Thank you in advance!
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Postby Vivianne766 » Tue Aug 17, 2010 1:20 pm

I have the same questions and totally understand. Their institute is operated by family members. and I never saw a post from any patient been treated there. I saw Dr. Hubbard in a conference on utube and he sounded great but... that's all.
:?: :!: :roll:
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Postby selkie » Tue Aug 17, 2010 1:28 pm

Hi Vivianne,

Have you been trying to resolve this by email as well? I keep getting replies, but the one I got today is they only do a brain MRI.

But then at their website, it lists about 4 other tests, including an MRA (which seems mistaken as an MRV is what looks at veins; an MRA looks at arteries). And yet Alexandra did not say they do either an MRA or an MRI.

I know the questions I have could be cleared up in 5 minutes if I could talk to a real person.

I have seen people here say they had a good experience at Hubbard, so I'm hopeful one of them will read this post and maybe they can clear it up for both of us.

Are you on Facebook? If so, you might want to join the CCSVI San Diego page, as I asked my question there also. And become friends with Devin Hubbard (I'm sure he's swamped with messages but I sent him one anyway.)

It sure doesn't help when I feel so brain damaged to try to make sense of all these seemingly mixed messages!

I hope someone can clear it up. If I find out something elsewhere, I'll let you know and please do the same if you hear something! Thank you!
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Postby pegmegrund » Tue Aug 17, 2010 3:42 pm

I haven't been to San Diego, but I know several people who have been tested there. It is my understanding that they do the following:

MRI
MRV of head and neck (this is the Haacke protocol and on the link listed below is shown as MRA, but in the description it mentions venous flow)
fMRI test

I think that it lists "MRA" on their website because they are mentioning specific CPT billing codes and have given the official title, but on this page it definitely mentions that they are evaluating venous flow...

http://www.hubbardfoundation.org/multip ... tests.html

If you're on Facebook, that seems to be an easy way to reach them. Both Devin and Arlene have been very responsive to my questions there.

Hope that helps...
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Postby selkie » Tue Aug 17, 2010 3:52 pm

I've seen all that the email I got today said this:

"Here are the answers to your questions.

We will not be looking at the Spine, rather we are only doing Gadolinium enhanced MRI of the brain. "



This is not what they say at their website. I've been emailing them for weeks and still get no clear answers. They don't answer phone calls. I'm beyond frustrated.

I've already emailed Devin on FB & he said he doesn't discuss medical stuff on FB. So I'm still in the dark.

She makes it very clear in the email, only an MRI of the brain.

The website makes it very clear that they won't refer to an IR unless Haacke protocols show blockage in veins. How does a brain MRI do that? Somewhere there's confusion but one thing I'm certain of, I can't afford a 5,000 mile flight and not get referred to an IR.
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Postby pegmegrund » Tue Aug 17, 2010 4:36 pm

Selkie,

Here is a note from my friend who was just there and had the tests a few weeks ago:

"this is what I had done and what is listed on my Medical benefits Request form w/ test codes etc. that I received from them after my test. This takes 2-3 hours to complete.
MRI of brain w/ and w/o contrast - T1, 3D FLAIR, 3D SWI
MRA of head w/ and w/o contrast - Flow quantification
MRA of neck w/ and w/o contrast - 3D MRI (dynamic), Hi-res MRA
FMRI BOLD
Neurofunctional Imaging

Received Results from Dr. haacke and his imaging group and referral from dr. Hubbard for Venogram w/ Venoplasty if needed."

While it is called MRA for the billing detail, they are definitely looking at the veins... They do the MRI and MRV. I saw my friend's report with images of the jugulars and collaterals...
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Postby TVirgil » Tue Aug 17, 2010 4:57 pm

Thanks Pam for posting my message, I was waiting for account confirmation.
I was tested at The Hubbard Foundation June 24th and had the following scans:
MRI of brain w/ and w/o contrast - T1, 3D FLAIR, 3D SWI
MRA of head w/ and w/o contrast - Flow quantification
MRA of neck w/ and w/o contrast - 3D MRI (dynamic), Hi-Res MRA
FMRI BOLD
Neurofunctional Imaging
This is what you get done for the $2500.00 testing fee.

My report from Dr. Haacke showed narrowing in both Internal Jugular Veins, a pinched Azygos vein and a narrowed left Vertebral vein. I will be having venogram and venoplasty September 1st.
I have nothing but positive things to say about the Hubbard's, they have been wonderful and I would do it all again in a heartbeat! Their website has list of scans they do, and Haacke protocol they follow. I have a few friends who have already been treated their and have had great experiences. I love that they got into this to help their son, they are doing this for the right reasons - to help people w/ MS and CCSVI. They have IRB approval so that they can publish the findings of their studies to help CCSVI treatment become standard of care. If you have any questions about going there you can message me on facebook - Tarah Virgil
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Postby selkie » Tue Aug 17, 2010 5:30 pm

Still, I have an email from Alexandria stating all they will do is a BRAIN MRI.

No mention of MRAs. The communication from them needs to be clear what they'll do before I continue with them. I'm terribly embarrassed as I asked my PCP for a referral which she agreed to because she thought I was being tested fully for CCSVI. Obviously only a brain MRI is not enough to refer me to an IR.

Why did Alexandria tell me I'd only receive a BRAIN MRI?
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Postby TVirgil » Tue Aug 17, 2010 7:18 pm

It is a MRV for CCSVI and everything I listed is included but the prescription from your doctor only has to say "MRI for MS" They need that in order to test you for CCSVI. I just asked Arlene Hubbard about this and since I don't know your name she asked that I have you email her with any questions at: hubbardfoundationarl@gmail.com
They are a research facility and are busy testing patients for CCSVI and doing follow up scans the day after people's venoplasty so most of their communication is done through email. I hope Ive been able to help you some. ~ Tarah
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Postby selkie » Tue Aug 17, 2010 7:37 pm

Hi Tara,

I did manage to send Arlene an account of the confusion, which is arising from an email sent to me by Alexandra stating they'll only do an MRI of the brain (nothing about MRA's, the fMRI or the imaging of brain function listed at their website).

Alexandra is probably misunderstanding what I'm asking her, but I won't make plans to go to San Diego until Hubbard specifies exactly which tests I'll get. My PCP is willing to write the referral, but if I don't see an IR, there's no point in me going to San Diego.

I'd be better off going to Albany even tho it's 3,000 miles further because they go straight for venography catheter. It's very frustrating because I've been emailing them for about 8 weeks and still get conflicting answers.

Thanks for trying to help. Hopefully I'll here from Arlene or Devin and they aren't too irritated with me asking everyone I know to help!

I feel like I keep getting my hope up only to have it taken away with a confusing email like the one I got today saying they will only do a brain MRI. I'm sure it's a mistake, but I can't spend thousands of dollars to travel there until I know exactly what tests are included. I prefer to go to Hubbard if this confusion can be sorted out.
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Postby selkie » Tue Aug 17, 2010 7:38 pm

Also, since my PCP is trying to get insurance to pay for some of this, we need to know exactly what tests they'll be performing.

There's no way a brain MRI is enough information to refer me to an IR! Yet Alexandra said only a brain MRI... :(
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Postby TVirgil » Tue Aug 17, 2010 7:58 pm

I'm sure she mistakenly said MRI - because it is a fMRI machine or thought you needed to know what to get rx for. I know for a fact that they do all the tests I listed, as I know many people who have been tested there also, and my report from Dr. Haacke is 36 pages long! Extremely thorough. I have heard Dr Hubbard say that even if there isn't much stenosis indicated he will still refer to IR for venogram, as that is the gold standard! And they are now doing testing/treatment in one trip. Hope you get it sorted out! :)
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Postby selkie » Tue Aug 17, 2010 8:31 pm

Thanks TVirgil - me too but they need to answer my questions. Hopefully they will. Thank you for the info.
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Postby MrSuccess » Tue Aug 17, 2010 8:40 pm

selkie - from what I have seen and heard , the Hubbards are first class.

You have to remember Dr. Hubbard is a Neurologist . And he is on your side. The Hubbard team is doing it's best to get CCSVI treatment up and running .

We all know the pitfalls .... as this goes forward . One big pitfall ....is getting the CCSVI procedure paid for by Insurance . Everyone wants that.

Perhaps it is best to arrange certain - paid for - procedures ..... then accidently do a little detour :wink: :wink: :wink: ..... while in the area ..... if you know what I mean ....... :wink:

I'm not suggesting that anything less than on the up and up .... is offered.


:D



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